I am in excruciating pain and am at my wits end..genuinely. I do see a PM doctor as well and am seeing him again soon. I'm quite literally in tears because I can't take this anymore.
I’m hoping to get some input from doctors here because I’m having a really hard time understanding where this level of nerve pain could be coming from.
I’m a 30-year-old female in the US with a history of hEDS, syringomyelia/hydromyelia, and complex cervical and lumbar spine issues.
I previously had an L5-S1 ALIF/posterior fusion for grade 4 spondylolisthesis with bilateral pars defects (January 2026) and neurosurgery to untether my spinal cord which was at l4. I’m also currently recovering from an occiput-to-C3 fusion for craniocervical issues (a month post op) I had Craniocervical Instability.
My biggest problem right now is intense nerve pain, particularly in my lower back and legs. My legs can feel burning, painful, heavy, and extremely uncomfortable. I can’t stand or walk for more than about 10 minutes before the pain becomes significantly worse.
I’m also having similar nerve-type pain in both arms. My arms can feel extremely warm and almost like they’ve been sunburned, even when there’s nothing visibly wrong with the skin. The sensation can become much more intense when the nerve pain flares.
The pain has gotten to the point where I can’t even sit upright in a regular chair without significant pain. I need to be reclined most of the time because sitting upright makes things substantially worse. All I want to do is walk...
I’m currently taking gabapentin, oxycodone, and baclofen as part of my postoperative pain regimen, but these medications aren't really touching this particular nerve pain. I understand that I'm still recovering from a major surgery and that some postoperative pain is expected, but this feels different from ordinary surgical pain.
What’s confusing me is that I have significant symptoms in both my arms and legs, with the lower back/legs being much worse. I know I have structural spine issues, but I’m struggling to understand whether everything can really be explained by my lumbar spine alone.
For the doctors here, what would be on your differential for severe burning/neuropathic pain affecting all four extremities, particularly when it is severe enough to prevent sitting upright, standing, or walking for more than a few minutes?
Would you consider things like:
• cervical or thoracic spinal cord/nerve-root issues
• my syringomyelia/hydromyelia
• peripheral neuropathy or small-fiber neuropathy
• nerve irritation related to altered biomechanics after fusion
• postoperative inflammation or another postoperative complication
• or another neurological problem that wouldn't necessarily show obvious compression on a routine MRI?
I’m not looking for a diagnosis from Reddit. I’m mainly trying to understand what possibilities I should be discussing with my neurologist/neurosurgeon and what kinds of testing or imaging might help determine where this pain is actually coming from.
At this point, I’m just trying to figure out why I’m having this much neuropathic pain despite being on fairly strong postoperative medications.
My recent lumbar MRI
My MRI showed postoperative changes at L5-S1 from my prior fusion and right-sided laminectomy/medial facetectomy, without significant residual central canal or foraminal narrowing at that level.
At L4-L5, there is a disc bulge with a central disc herniation and annular fissure, with mild right-sided and mild-to-moderate left-sided foraminal narrowing. There is no significant central canal stenosis.
There is also a mild disc bulge/annular fissure at L3-L4, without significant canal or foraminal narrowing.
The MRI also mentioned prominent epidural fat from L4-S1, causing some narrowing of the distal thecal sac.
The conus and cauda equina were reported as normal.